My son, too?

[T_Anna]

Hi PowPow, I hope I didn't make it sound better then it is. After the blood tests came back with Hashimoto's Encephalopathy and elevated SED and ACE (markers for Neurosarcoid), we decided to try another oral steroid burst, this time at 80 mg a day. He did well, he was in a better mood, able to discuss school and illness a bit (usually a taboo

subject) and not fatalistic. We re tapering down now and it's still going well. And after this week's IVIG we hope to do an IV Steroid.

 

Unfortunately, I still haven't found anyone in the area willing to treat this in a hospital setting. The doctor who did our PEX won't touch the encephalitis at all and I left several messages

with Dr.Gs office and haven't heard back from them either. So we are doing AE treatment "ad-hoc" and without immune suppressants since no one here wants to delve into those. Our Dr.G appt is Nov 11 so we'll see if we hear back and get any further on our own. I also have started with an integrative and we will try her immune support supps starting the end of the week too.

 

T.anna

DS15 - now a nice kid locked in a homeless man's body.